Hi. I had a large subarachnoid bleed in July. I was lucky that it was not caused by an aneurysm so I didn't need surgery. My only physical symptoms were the headache, vomiting etc, but no weakness or anything like that. I spent a week on a neurosurgery ward and then came home. I spent quite a while feeling almost euphoric due to the series of fortunate events that meant I was treated very quickly and of course the fact that I didn't need surgery. I went back to work 6 weeks later and to all intents and purposes am functioning normally. However I am struggling to rebuild my confidence in terms of fitness (it happened when I was out cycling on my own) and just living with that thought that it may happen again at the back of my mind. I'm struggling to access appropriate counselling & thought "talking" on here may help.

8 Replies

TI'm sorry to hear that you have been through the mill there but good that you did not need the surgery.

I think most folks on here will identify with how you have been feeling.

I havent got the balance to do a bike ride unless I got a ride on the back of a tandem and was taped on tight!.

Can you look at doing something you feel a bit more comfortable with to keep the fitness going? maybe a class or yoga or summat? Or a spin class at a gym? Swimming perhaps... our Matt on here is getting pretty good at it!

It takes a while to get your confidence back but if you give yourself little targets it is easier

Be kind to yourself, just do whats comfortable and a little bit more each time.

Lack of aftercare is something many of us complain about. After my coiling procedure for a SAH and two months of excellent hospital care the time came for my return home, and to confront my bedroom where I collapsed with the bleed.

The broken lock on the door was the first thing I noticed (it was forced open when I was heard hitting the floor) and I suddenly felt very vulnerable being alone again without the 24 hour care.

So I decided there & then that I wouldn't be a victim ; I'd been rescued & repaired and I needed to embrace the 2nd chance I'd been given. The next day I was fearful about venturing out but I wanted to prove, from the outset, that nothing bad was going to happen if I walked to the shops and back. (Even though there was a shadowy, familiar figure dodging in & out of hedgerows following from a distance).

Your best bet, in my opinion, (and balance permitting) is to get back on your bike alongside a fellow cyclist and see how utterly liberated it'll make you feel. You've made such great progress so far my friend, and in a really short time, and facing your fear is the surest route to claiming back your confidence.

Little and often might be a good start to taking back control of your fitness and your freedom. Good luck N ! All best wishes, Cat x

My husband suffered a SAH and also had an aneurysm so lots of surgery and rehab. We went to thi chi which really helped with balance. Also check if your local council run a cycling club, you may be able to get some help there. Good luck, it takes lots of time and patience x

You are very fortunate to have bounced back so quickly from your SAH. It seems that you are attempting to get 'back on your bike' too soon. The old sage advice comes to mind.... learn to walk before you run. Sounds like you maybe somewhat deconditioned since your hospital discharge. I do believe that swimming will improve your fitness and your confidence to start cycling again. xx

Yes I think it is largely the norm to initially have that huge sense of euphoria with the reality of what you have survived and the alternative outcome. For me it was that I wasn't expected to survive, so the fact, I had buoyed me up. However, then the reality hits hard of the fact that the brain has been injured and life will not be the same. Then comes the emotional crash. Adjusting to that and accepting life now is a very difficult situation to come to terms with. Plus the fear factor of will it happen again and this time ........ What you have highlighted about not being able to access services in the NHS eg counselling is a common situation for a lot of us post bi. With the NHS it seems to be a postcode lottery whether there is bi specialists in your area. I am one of the many who has not been able to access much at all and have been passed from specialty to specialty with each deciding someone else should be seeing me .....but who that is I've yet to find them?! I also refused to go to rehab and to this day I wonder that if I had would that have put me in the system of better specialist follow up and support. But as a single adopter I had a son who needed me back at home as the impact on him had been huge.

I do think that you will find it helpful to 'talk' on here as this is the place where everyone understands your difficulties because we are going through it too whereas society sees you as looking perfectly well and don't 'get it' so are great at crass, unhelpful and inappropriate judgements and comments!

Thank you all for your responses so far, it;s great to be able to talk to others who understand. I'm going to look at yoga and Pilates and my daughter is quite keen to go out cycling and swimming so it would be good to do that with her. I think I've expected too much of myself probably and originally not realised how much impact this would have on me/all of us as a family. We need to allow ourselves time to come to terms with it and to get back on track.

Don't push too hard, I slowly built back up. It took me 5 months until I rode a bike properly as you where! Some of it was I wasn't strong enough or stable enough. Oddly my balance is better on the bike than walking, go figure.

And some was fear, even though it had nothing to do with my accident I had a real thing about riding on the road for a good year or more. But slowly I built up.

There are tracker apps on phones or on devices such as Strava Beacon and others so others know and can see your doing okay.

Ah, echoes of me right there. Welcome, Northender71, and be assured that 'we' will get you. Non-judgemental, faced with the tribulations of post brain injury life, and a hell of a lot of "Oh, I thought that was just me!"

My SAH was aneurysmal, two weeks in hospital, discharged without advice or guidance, and I tried to bounce back into my old life, like Tigger in a WonderWoman costume. Everyone tried to tell me to slow down, and I realise now that for a fair while I hadn't processed the enormity of what had happened. Processing is key, I had accepted what had happened, and the adaptations I needed to make, but I hadn't processed it. Niggles, and wobbles, and really weird 'deflected' anxiety became my normal. (They'd found two other aneurysms in there while they drained and coiled the ruptured one, and, instead of fretting about what-if-this-headache-is-one-of-the-aneurysms, I'd have disruptive panics about there being a snake in the kitchen, or wake up at three in the morning, wondering about bus-routes to places I wasn't going, it's quite a bit like being mad sometimes.)

I bounced, I developed obsessive over-compensating behaviours, and I exhausted myself every single day trying to prove myself. I didn't process that the haemorrhage could have killed me, because it hadn't. The right kind of support can be a postcode lottery, and a lot of 'us' are shuffled around many different hospital departments, I'm currently assigned to six different departments, wondering if I can collect stamps, and get a free procedure, like you do with loyalty points.

Generalised counselling might help, you had life-threatening medical issue, and you need to process that, put it to bed as it were. Neuro-psychology might be better, the fact that you didn't have any invasive surgery doesn't mean the haemorrhage didn't crush and injure your brain. Whatever you choose to do, good luck, and 'we' are always here on the forum.